The Tierney Times

Wednesday, January 9, 2013

Once again, it has been too long since I have posted ANYTHING. I did not make any new years resolutions this year, since a 'resolution', for me, usually results in a let down and a total loss of dedication a few weeks down the road.
For this year, I will just simply call it a 2013 goal to communicate better...in the form of my blog. Let's see if I can pysch myself out (and make Uncle Don happy....he keeps "bugging" me for blog updates)!
Well, I official feel like we have moved into the new year because the Christmas decor is down. Delainey and I packed it all away this weekend. Even though we did a very scaled back version this year, and did not even put lights on the outside of the house, the very act of taking them down means Christmas is over and the New Year has begun.....even if the calendar said it was already January 6th!
My house is back to its normal state of chaos and yesterday Delainey returned to her bus riding, school going routine. It is the New Year.
Our holiday break and Christmas was pretty good. Delainey had the standard two weeks off from school and our schedules allowed us to manage that well, something I was worried about! Delainey was able to spend some quality time with Grammy and Papa during her break and, in usual fashion, was absolutely spoiled! Her favorite gift was the Wii that Santa delivered and she has been spending every minute that we will allow her on it. We have instituted "Wii Free" days.....no that doesn't mean that she can play Wii anytime she wants.....it's more like a "sugar free" day....NO Wii! Didn't think that would happen so quick. It's adorable to watch her play and so far we only have games that are tailored to her, so daddy hasn't tried to steal her glory! I did have a friend (that shall remain nameless :) come over for a visit the other day and he and Delainey played Wii for about 4 hours straight. I'm glad he came to visit ME. Haha!
The other BIG highlight of Christmas break was the snow! Over the two week break, we had over a foot of snow, and it was great! The last day of school there was a snow delay of a few hours, which was an interesting experience for us! On Christmas night, we went into Blizzard Watch and mom and dad left our house a bit early to make sure they were ready. We got about 6 inches of snow the next day and although it was very windy and things we shut down everywhere, it wasn't too bad. It could have been worse, and some areas got over a foot that day alone. A few days later we got about 8 inches but without the wind like we had before and things were just beautiful. Most people around here hate the snow. It's cold, but it is beautiful! The roads are well taken care of and the only time I don't like it is when the roads get icy. In the meanwhile, Delainey and I will continue to have snowball fights and have as much fun as we can....this year she threw snowballs while I threw shovels full of snow. I was shoveling the driveway and she was trying to sneak up on me....I think I won, but she was laughing the whole time!
Now it is back to the grind! I think that we will have a lot in store this year though....and hopefully I will keep up with it on here! Delainey is in Girl Scouts and is selling cookies for the first time right now....this should be fun! She has her winter recital coming up in Mid-Feb. She is turning 6 at the end of Feb (WHAT!!!!) and fingers crossed, we are heading on a Disney Cruise this fall. Details to come on that one....fingers crossed we will know for sure in a few weeks (just a warning....I am already slightly obsessed with it, so if I stick to this blogging thing....you may receive lots of info on the Disney cruise pre and post!).

Wednesday, January 4, 2012

Genes. They are what gives my baby girl her big blue eyes and sparkling smile. They are what I blame for her strong will and undeniable curiosity. They are what I hope will give her then benefit of growing a few inches taller than her mommy and what I will deny when she probably does not.

Genes have an amazing way of linking people and give us the ability to recognize relatives that we may have never even met before. Genes are responsible for our looks, our personalities, our mannerisms, our faults, our blessings and everything that we are or will be...to some degree.

Genes. We are thankful for many and curse others.

I should be somewhat of an expert in genes. I am surrounded by the effects of genes in my everyday personal life as well as my professional life.

I am constantly telling my husband that the faces he makes, tone of voice and looks that he gives remind me of his dad. Thank you genes. I look at my beautiful daughter and can't help but think back to myself at her age. Even my childhood pictures cannot deny the genetic influence of her looks. Those are some good genes, if I say so myself!

At work, we are constantly asking about family history and the genetic aspects that may affect our patients health. I am surrounded by the concept!

Though surrounded, I think that I often minimize the importance.

Today was a day of remembering and a day of realization that our genes are undeniable and unstoppable.

I spent the day surrounded by family that I have only learned about and gotten to know since I moved to Indiana. Before, they were faceless names and distant people that I had heard about or met once or twice. Now they are more real. Now I can put faces with their names. I can trace their family trees and (with some help and reminders) can link who belongs to who and know some of the trials and tribulations that they have been through. I can see where we get our "giant eyes" and see other little traits that I have spent my lifetime trying to figure out who they came from. I can look around the room and see reflections of the only biological uncle that I grew up with. In fact, as I looked around the room, I saw about 20 versions of my Uncle Don in various stages of his life. In pictures, I saw my grandma as a child and felt like I was looking at my Auntie rather than my Grams. In fact, I even saw my cousin Stephanie in the pictures. Not actually Stephanie, but the genetic representations and influences that have made Stephanie look like Stephanie. I overheard others exclaim how much "my son looks like Uncle So and So". There was even playful bickering about who "that picture" really was. The genetic influence was so strong that there was no doubt....we are all related.

There was another genetic trait in the room that was undeniable. "The family disease".

For many years it was unspeakable and still causes discomfort for many of my family members to even mention. What once was blamed on a spider bite has now been given a name, Rapid Onset Dystonia Parkinsonism.

Today my family all gathered to pay tribute to the life of Elcer "Bud" Pursifull, my great uncle and one of only two of my grandma's surviving siblings. All together there were 10 children in my grandma's family and although I am not positive, I believe that of the 10, at least 6 of them have had RODP. My poor grams has lost 5 of her siblings in under two years and she is one of the 6 I mentioned before.

RODP is a cruel genetic joke, like so many of the other genetic diseases out there. There is no rhyme or reason. There is no planning. There is no warning. There is no understanding. There is only acceptance, for which is difficult, if not impossible for many. One day fine, the next day not so much. In some cases, one minute fine, the next not.

Uncle Bud had 14 children, 59 grandchildren and 105 great-grandchildren, though after the service it was discussed that a few may have been left out of those numbers. He was 85. I don't know when he was diagnosed or how quickly his disease progressed. What I know is that his mind was sound and there doesn't seem to be a picture where he wasn't smiling. When I "met" him last year at another family funeral he walked right up to me and said "I remember you from California". I would have been in diapers still, but he remembered me. An incredible memory. His body may have been "flawed", for lack of better term, but his mind was sound.

That is one of the many cruelties of the disease. It robs the body of the ability to work properly but leaves the mind to allow one to know of the loss. I suppose that is a blessing in many ways, as well. The gift of being able to experience so much. 85 years. WOW!

Looking around the room there some subtle signs of the genetic presence and others that were not so subtle. There were some who I saw last year who appeared healthy and this year need the assistance of a cane to walk. There are others who required wheelchairs to attend the service and some who outsiders would be unable to see the slight inward turn of the wrist or hear the faint pause in their speech. Some were only able to communicate with a slight hand gesture and others that you would never guess were affected. Even my grandma has barely discernible symptoms. She knows and we know, but the outside person would never guess. Stress and emotions only draw out symptoms. This, too, was evident today as one family member walked in to the service along with the majority of the rest of us, but had to be physically carried out when the emotions seemingly "turned on" the disease.

As I scanned the room, it was hard not to think about who would be next to "win" this backwards family lottery. It was hard not to wonder who else was secretly battling with this crippling disease. It was also nearly impossible for me to not think of the hope. With so much tragedy and pain, there is also so much room for hope.

Already in MY lifetime, the gene has been isolated. Sweet ATP1A3. It may not mean much to others, but for us, it has been found.

Many of us have been participants in genetic studies for the disease and have given medical information and blood samples. In return we were all given a pedigree number! Oh joy! One of the only humors I have found in this over the years!

For years, the testing was for research purposes only. The researchers knew some degree of our fate, but we were not privy to this information. A few years back they gave the option of being retested for our own informational purposes.

This left a few options. To be or not to be.....tested, that is.

It wouldn't give an answer to whether or not we would get sick, only if we were carrying the possibility of it. Initially I was ecstatic. I contacted them immediately and asked for my testing kit. By the time the kit arrived, I had put enough thought into it to realize I didn't want to know.

What I do know is that I still have hope. If they can find a gene in one lifetime, they can find a cure. As I said before, there is no rhyme or reason, only acceptance.

I have accepted that I am a member of a very exclusive club of amazing people.

People who have overcome a disease that little is known about.

People who have thrived and flourished.

People who live their lives with smiles and tears, just like the rest of the world.

People who have strengths and weakness and who have to make adjustments in their everyday life.

People who would rather not deal with this genetic link, but have embraced life.

People who are lucky enough to be a part of something big...part of change, part of growth and part of giving hope to others with RODP.

People who live to 85 years of age, have 14 kids, 59 grand kids and 105 great-grand kids.....give or take a few.

Those are some genes that I am thankful for and look forward to sharing in, after all.... It is all in the genes.

Monday, December 19, 2011

Well let me begin by saying that we hope this post finds you all happy, healthy and ready for the rapidly approaching holidays!

As for us, well, we are happy, all FINALLY healthy and frantically scouring stores for those final holiday gifts and decorations. I must say, I have done better than I thought I would, yet I am still more behind than I thought I would be! C’est la vie! I supposed that is only fitting considering the year that we have had!

And oh what a year 2011 has been! A year of challenges and a year of opportunities! I cannot say that I am sad to put this year behind us, but overall it was an amazing year and one full of memories to hold for a lifetime! I am thankful for every twist and turn the year has taken since it has brought us to where we are today!I may not have accomplished what I had hoped for this year, but my year has been bountiful, my gifts have been great, my prayers have been answered and my heart is more full than I knew possible. What more could I ask for?

The Parental Update...

As sad as it sounds, I do not remember much about 2011 prior to my birthday. It seems that as the years have passed, my birthdays have mattered less and less. I am grateful for my life and thankful to have a day to celebrate it, but I think as we all age, we learn to appreciate every day for what it is worth and that one day, no longer holds as much excitement and wonder as it once did. This year, though, was different!

The tables were turned this year, and for my birthday, I got my parents! They moved from California to Indiana and arrived just in time to be my special gift!

What did that mean for us, you ask? Well, a whole lot of unexpected drama and chaos, as you all well know! Within a few weeks, Dad was in the hospital, went on his first (and hopefully last) helicopter ride, and spent 3o-some days in the hospital. A collapsed lung, open heart surgery, lung surgery and 6 months of Cardiac Rehab later, and he is doing amazing! A miracle we truly didn't believe was possible!

That is obviously the Readers Digest Condensed version, as most of you know! It was really a full time 6 month process that ended with my Dad having a miraculous recovery. Hey may not be 100% yet, but we will take the 75% that he has worked so hard to achieve!

And I cannot fail to mention the unimaginable support from our friends, neighbors and coworkers here in Indiana! We had such an amazing outpouring of support that we wouldn't have been able to cope without. From our family flying in to be with Dad and help with Delainey, to friends offering to watch Delainey, coworkers cooking dinners for us for weeks and amazing friends giving up their time to sit with us in the hospital....our hearts were overwhelmed! We now know what that "midwest hospitality" is! Amazing!

Of course during all of this, Delainey was lucky enough to have Grammy and Papa at her full disposal, 24-7 from March thru October. She definitely made up for lost time and showered them with love and excessive energy, and of course received equal showers of love in return! Grammy was able to come to her second recital in June and Delainey shared many of her favorite Indiana sights and activities with them! She showed them how 4th of July is done, Indiana style, and the hundreds and hundreds of dollars that Papa spent on fireworks will probably be put to shame next year when he is actually able to do more than watch from the deck. He will need to be quick on his feet though, because I am sure one more crazy man in the mix will lead to more close calls than this year. Two explosions and one small hole in the neighbor’s house will probably seem minor next year when Papa puts his twist on the fireworks!

I think the fall was their favorite so far! Mom was in heaven watching the leaves turn and heading to all of the local fall events! We even took Papa apple picking! 21 pounds of apples later and I think it is safe to say he enjoyed himself!

We are finally heading into winter and I cannot wait for the snow! We had our first sprinkle of snow a few weeks back and Mom had to wake me to tell me! What a rookie! Let's see if her enthusiasm lasts the whole winter!

Darling Lil' Delainey...

Our sweet baby girl turned 4 in Feburary! Where did that time go? Just before her 4th birthday she had her first dance recital and was adorable! She is our perfect tiny dancer! She loves to dance and especially loves her teacher Miss Erin!Just days after reaching the mature age of 4, Delainey underwent her first (and, again, hopefully last) surgery. A few weeks of heck and minus tonsils and adenoids, we had a new and improved and considerably more squeaky voiced Delainey. The surgeon said that her vocal cords were not getting enough air flow prior to surgery and that this new, higher pitched voice is permanent! I am still seriously considering a malpractice suit!

The summer brought Delainey’s second, and much more formal, dance recital. Delainey participated in her two scheduled dance performances and was also given a small part in a selected presentation! She did amazing and was thrilled that Grammy got to come to this one!

She rounded out her summer with a performance as the flower girl for our, now happily married friends, The Strachota's! She did great, and despite a face plant into the concrete 36 hours prior to the wedding, she was adorable... black and blue face and all! The rest of the trip was a complete blur. We didn't stop the entire time, were barely able to see anyone and missed our flight home! Let's just say, it'll be awhile before we repeat that crazy journey! 10 days and hundreds of happy memories made it all worth it, though!

Delainey’s highlights from the California trip are probably not what you think! Although she enjoyed Disneyland, her list of favorites included seeing her friends, “Maa-Maw” and especially meeting her “new” cousin Makenzie and reconnecting with other cousins Madison, Shae and Maylea! Shae is still Delainey’s idol and she cries hysterically each and every time we Skype and have to hang up!

Delainey’s other highlights this year have included her friends...namely Abbie, Tyler, Zachary, Sidney, Jaclyn and Chloe! These friends range in age from 2 & ½ to 11 and all but Abbie are our neighbors! She has been lucky to have such great friends so close by!

Her aspirations for next year are to play lots, start Karate, Soccer and Swimming and to plan parties! She is my child in that respect and has been inviting people to a party that we didn’t know we were throwing! Now, despite being cute, just like Mommy, and having lots of future goals...she is crazy like her Daddy! She loves to be loud and goofy and keeps me on my toes! In fact, as I am typing, she is in her bed, supposedly going to sleep! Of course, this is not actually what is happening! In reality, she is laying in her bed dancing (because we will not allow her to sit up) and is singing at the top of her lungs to her nighttime music CD. No, she is not listening to lullabies or calming Disney songs...her current CD of choice is a Barbie album with current pop songs such as Outkast’s “Hey Ya” and Hillary Duff’s “So Yesterday”. This is a CD that she and Daddy picked out from the library! Oh joy! I thought I had a few more years before this phase would begin!!! With her love of music, I suppose it should be no surprise! She truly is a joy and even in her crazy moments, I wouldn’t change a thing! Her laugh is infectious and those big blue eyes melt us all! She has her Daddy wrapped around her little finger and she holds my heart in her hands. It is amazing to think that she has only been here for 4 & ½ short years! She has brought more love, joy and amazement to us in that short time than we ever thought was possible. Our little peanut!

Daddy-O...

Ryan is, well, Ryan! He has mastered the art of being the homebody! If it doesn’t involve sports, Seinfeld, The Big Bang Theory or his new IPhone...it doesn’t matter. He is the single greatest supporter of Netflix and Get Him to The Greek plays on our TV like a marathon!

His goofball nature has only multiplied since our move out here and his single greatest goal is to become a master griller! A skill which he is far from reaching! He is looking forward to the snow, only for the fact that he can stand in the freezing snow and grill on the deck! I think it takes him back to his cave man roots or something!

All jokes aside, Ryan is really enjoying life here in Indiana as much as the rest of us. He is still working at Whole Foods as the second man in the produce department. He has learned that the grocery industry can be way different than he knew it before and actually enjoys going to work! The local pro football and basketball players are regulars at his store, so he is constantly giving the name of someone that came into the store that day! I just shake my head, smile and pretend to have half a clue about who he is talking about!

Last month he was selected for trip to Chicago to represent his store in a big growth planning session for the company! He has also learned from caring for all of us ill and injured people that, although good at it, caregiving is not his calling!

He has been more than amazing this year and I have been reminded countless times why I love him some much!

Hopefully in the coming year Ryan will be able to get back to doing the things he loves! We have a million golf courses close by and I know he would love to get back to that! We are also hoping to take advantage of our new “babysitters” and maybe take and Mommy and Daddy getaway or two! Anyone up for a trip to Nashville? Or maybe a visit to St. Louis to catch a Cardinals game? Oh, I know VEGAS BABY! A Vegas trip is definitely in order for 2012! Let the planning begin!

Mama-Mia...

I am sad to announce that I have been severely neglecting my crafting addiction this year. My scrapbooks are bare. The number of you that have received handmade cards have dwindled. My ribbons and yarn are piling up in quantities long enough to stretch to California and back. I am thinking about joining a support group for those who have been abandoned by the crafts they love! Again, hopefully this is a situation that will be resolved in early 2012!

Until then, I will continue trying to get myself back into some routine! Truthfully I am just amazed that I had time to breathe this year and I am thankful that our dust bunnies have not overpowered the dogs yet! Oh yes, did you catch that…dogS! As in plural! As in we (and by we I mean ME), finally found the second pooch that WE were looking for! Stella, a Beagle/Dashaund mix joined the family last month! She is adorable and sweet and is the perfect fit for our family! I finally feel like our home is complete (said with a dramatic flare)! She really is a cute lil dog and Sheba and Delainey are loving her! Daddy is too, though he won’t admit it!

Besides spending time with my 3 girls, my year has been filled with the normal household junk, work and school! Yeah, I said it, the “S” word! School! I am nearly done with an accelerated Bachelors in Nursing Program thru Purdue University! GO BOILERMAKERS! Somehow, thru this chaotic year, I have been able to maintain straight “A’s” and should be done in May! I am just thankful for the opportunity and for the ability to grow within the Nursing profession!

I also joined my family in the surgery club and had to have knee surgery August. I hurt it back in May when Dad was in the hospital and it has taken awhile to get things figured out! It is not back to normal yet, but you all know me well enough to know that it is doubtful that I will ever achieve a “normal” status!

As if all of the year’s excitement wasn’t enough, I also took a new position at work. What can I say...I love a good challenge. I took a position as the Clinical Coordinator for the Intensive Care and Progressive Care Units at my current hospital. This has been an exciting opportunity and I have learned a lot more about nursing management than I ever knew before. It is challenging but I am really enjoying it! Our hospital is really growing and I feel privileged to be a part of that growth!

Best Wishes...

I think that that is pretty much the condensed version of our year! As I said before, it has been a year of blessings and a year of change! I am still convinced that our calendar was missing a few pages, though....that would explain the time lapse. I hope that 2012 brings us as many wonderful memories but hopefully a bit less chaos!

We have been loving all of the Christmas cards, pictures and packages and hope that you are all looking forward to the holidays as much as we are! We love and miss you all and are taking reservations for our guest room in 2012!

Mommy and Delainey, reenacting a picture from when she was about a year old!

Daddy and Delainey doing the same thing!

Papa recovering and Delainey resting with him!

First EVER haircut!

She did so good!

Miss Attitude ready to party at Viv's birthday!

Diva!

Sidney, Jaclyn and Delainey at the Apple Farm

Apple pickers on the loose!

Such amazing girls...so lucky to have them right across the street!

Surprising Papa with a little Rehab Graduation Celebration at his house!

The Party Planner!

Papa's cupcake cake!

Papa and his girl!

Cinderella Delainey doing some early trick or treating at the downtown Halloween celebration....they do some sort of family event the first Friday of every month and they are so much fun!

Another Hot Air Balloon close call....this one came right over our house and was within inches of hitting my neighbors house....don't let that duck fool you....it was scary!

Although the whole neighborhood loves coming out to see them....including Delainey!

Princess Delainey, all ready for a birthday party....like the pose.....I am in so much trouble if she is posing like that already!

Delainey and the neighbor....it was a Knights and Princesses party!

Daddy and Delainey at Grammy and Papa's

Papa and his sister, Joretta

Trey, Papa, Grammy, Aunt Joretta, Andrea, Delainey and Sammy, enjoying a visit! They drove in from Ohio when Aunt Joretta was visiting from Las Vegas!

My Little Devil....literally!

Her idea...not mine.....too bad she wouldn't actually dress up on Halloween or go trick or treating....this was before a party that she only lasted 5 minutes at....she may look tough.....but she is a chicken and was terrified of Halloween this year!

Delainey meeting our new dog, Stella!

Don't let the crazy eyes fool you, she is so sweet!

Delainey at the Phineus and Ferb show....which she only lasted halfway thru!

Picking out our Christmas tree!

Daddy cutting down our tree!

Again with the poses!

Sweet girl in the tractor!

Perfect day for cutting down a tree!

Beautiful baby!

Delainey and Abbie making Christmas treats!

Stella's new favorite spot!

..and Sheba not allowing her to have any attention without getting in the middle!